Scleroderma & Raynaud's UK (SRUK)

Aches

Hi all

Just another quick question, as per my previous post I have recently been put under a specialist for onset Scleroderma, Sjögrens and secondary Raynauds. I suffer from Reflux, fatigue and a few other symptoms but I live a normal life. I have noticed though that when I catch a bug wether that be a cold or sore throat or develop an infection my whole body from my jaw to me feet ache. I know many people do suffer from aching joints that have auto immune diseases but this isn’t something I’ve overly suffered from unless I come down with something and I’ve never ached like that before prior to when this whole thing came to light. I feel relatively okay a few days afterwards but the fatigue really gets hold. I also feel like my body can’t fight infections like it used to, I’m always picking something up. Is this normal? Or is this part of the whole Scleroderma/Sjögrens thing? I also over the past couple of weeks do generally feel slightly more achy than usual even when I’m not ill. My work aren’t happy and requesting to see my medical records. Any advice would be greatly appreciated X

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I am exactly the same with picking up infections etc I have been for a few years now and always wondered why! Now I’ve been diagnosed it makes more sense even if it does drive me mad!! X

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Me too! I know how you feel! I’m finding it frustrating because my Rheumy/Specialist has said it’s a watch and wait game, so I haven’t been ‘officially’ diagnosed as of yet I believe but he’s 100% sure I have Scleroderma and he said the anti bodies in my blood suggest Sjögrens too. It’s frustrating because I’m in limbo and without an official diagnosis I can’t give work the answers they want! So annoying! Have you had this problem? X

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I’ve been diagnosed with scleroderma now from my dermatologist as well as the rheumatologist I am seeing but only after 4 years am I starting immune suppressors because my skin is continuously flaring up! Amongst other problems too! X

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I’m also self employed, hope that helps x

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😂 That May be the answer! Would make things a lot easier! X

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I have had 1 bout of pneumonia 2 chest infections and 1 very prolonged head cold in the last 12 months. They just keep on coming and i am left with fatigue for weeks after. It is very wearing, I totally sympathise.i have Scleroderma diagnosed 4 years now. There is no end to the symptoms with this disease. If not one thing it's another. I keep myself busy as I can in the good times. One day at a time. Could be much worse. Waiting for a cure.

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Thank you Mylreaclairelee. Sounds like you’ve had a lot on your plate the past 12 months! I think because I haven’t had an official diagnosis yet they’re not taking me seriously which is stressful. They just keep talking about my Raynauds, I guess because that’s the only thing they can physically see. My manager said outwardly I seem fine which I am most of of time, but I don’t think they really think there’s anything wrong with me. Such a frustrating situation to be in. I hope all is good with you X

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My Rheymatologist says I get viruses worse and for slightly longer but the thing to focus on is that I do fully recover. When you think about it, scleroderma is your immune system attacking you, and a virus or other infection causes your immune system to become more active.

You might email your consultant’s secretary and ask if they are able to provide a letter or similar to advise you’re under investigation for your work.

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Thank you The_Bear! I wasn’t sure if they would be able to provide a letter for something like that but I will phone them today and see if there is anything they can do because work just don’t understand anything I’m saying to them 🙄. Thank you for your advice and I hope everything is good with you X

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Hi Dani_7, so sorry to hear about your "troubles". Reading the various replies reminded me of what worked well with my then Employer. For some years I kept getting recurring back issues that meant I would be off work for a few days, a few weeks, or be worn out, or be very ineffective, or any of the many irritating non-specific things that make life so difficult - and your Boss doesn't understand because your symptoms change and you don't have a named issue.

Eventually I realised that part of my problem was that by the time I got to see a specialist the symptoms would have subsided again. So I asked my GP for a private referral letter in advance. The GP was a bit dubious about it but he wrote me a letter and then as soon as I went downhill again I took his letter straight to the private clinic - back in the early 2000s a first private appointment was about £120. The fact that I was prepared to pay for this myself and that my Boss got a report from the specialist so quickly, changed everything. Although I went back into the NHS for further treatment and eventual diagnosis, taking those first few steps myself, made the company realise that there was something wrong and that I really did want to work. From then on they did everything they could to help me a productive member of staff.

I hope you get the help you need very soon.

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Thanks so much frillyhilly! I think that may be the route I go down to be honest. Because I look fine and live a normal life they’re struggling to take me seriously but I don’t think requesting my medical records right now is going to give them the answers they need because it’s still undiagnosed. I just feel like it’s aleays bubbling in the background, like today I feel fine but all day I’ve had little aches coming and going in different areas of my body. It’s not too painful but they’re there. I worry that maybe I’m being paranoid? I just don’t know. I just don’t know what’s what anymore but I know it can take years to get an official diagnosis and I wouldn’t still be under my specialists care if there was nothing wrong with me but they just don’t understand. Thank you again for your advice and I hope all is good with you X

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Hi Dani, hope you are having a better day today (I'm missing that lovely sunshine).

I didn't mean to suggest you get your medical notes to HR/your Boss - I just wrote out what I meant badly - sorry.

Bearing in mind this is some years ago, when I got to see the specialist privately they then they wrote to my GP and I also got a copy. of the letter/report. The letter was about what we had talked about, the symptoms I had had and the ones I was presenting with on that day, and how all this was affecting me, etc. In my case, I was fortunate enough that the consultant immediately saw some routes we could try that had been missed earlier (exactly why I wanted to be seen at my worst). His letter contained suggestions of ways to go forward and why, that he was going to keep seeing me in the NHS and why, etc. There were no medical records included.

For me the letter showed my Boss and HR said that there was something going on and that I was taking it seriously and that the the NHS had a plan in place. For me this was just what I needed.

The thing is you don't need to give any of the information you get from a private consultation to your Boss/HR/etc unless they actually pay for the appointment. I didn't even tell work about my private appointment until I had received the letter and decided that it would be useful in getting work to help me out.

Personally I think it's worth the cost of that one private appointment when you have symptoms that vary so quickly it is hard to get to the right person at the right time. It took a further 18 months from there, but it was the private consultant who suggested the tests that eventually got me the diagnosis. and I believe that was simply because he saw how bad I was.

So sorry again for any confusion. All the best, N xxx

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Hi Dani, I empathize with you regarding fatigue and aches. I don't have as much joy of living anymore, but I keep on trying to participate in everyday activities that give me happiness. Your employer and coworkers need to appreciate your efforts and accept you as you are. God bless you. Stay strong. Good vitamins (Shaklee) are helpful and a little over the counter liquid B-12 helps, too.

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Thank you Beaglab! I am sad that you feel that way but I’m glad you can still participate in everyday activities and they make you feel better 😊. I generally feel okay it’s just always there in the background causing some kind of problem. I hope all is good with you! X

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Thank you. I will try to get back to you soon. I gave vehicle problems right now, my brake hose broke, friends are helping me

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